Wednesday, March 4, 2009

Nathan's 2E Story

Originally, I would have said 'our 2E journey'. However, after a conference last week, I'm discovering that there's a strong case for Andrew as a high-functioning 2E (but I'll leave that story for another day). Nathan's story goes back to infancy when he had repeated ear infections and had to have tubes around the age of 15 months. Those tubes became clogged and had to be replaced about 15-18 months later. We now know that fluid on the ear can cause hearing problems and that antibiotics thicken the fluid of the ear making hearing a little more difficult while on antibiotics. He always seemed speech delayed, but every time we had him tested, he came back as slightly behind, but not enough to qualify for services. Our preschool has a fantastic program for kids like Nathan who are 2 1/2 in the fall. They have "Toddler Friday" where the kids go to preschool each Friday. It gets them into the school routine and it made Nathan feel 'big' like his older brother who was already in school. At preschool, I noticed right away that he never played with the kids, it was next to the kids. Parallel play is still considered OK at that age, but he was the only one. It bothered me---a lot.

The following year in a normal two day a week class for 3 year olds, we still had parallel play. He only interacted with the kids if their play crossed into his. We always joked that Nathan's world is this big circle and the real world only intersects a small corner of it. (See the diagram at the left.) If you happen to catch Nathan while he's in the 'real world' corner, he's a lot of fun. Otherwise, he has a great time on his own.By the time he went to preschool three days a week at age 4, Sean & I knew there was a problem. We knew that if you look at a room full of kids, you can always spot that one kid who is just a little 'different' or a little 'off' of the other kids. It was OUR kid!!! He was having terrible transition issues at school and home. He cried everyday when I left him, he cried when I picked him up, he cried over things during school that we didn't understand. He would wake up in the mornings before anyone else in the house was up. He'd sit on the couch in the dark by himself and cry. I'd rush to him to see what was wrong and he'd say, "Nobody likes me." I couldn't even convince him that I liked him--and I'm his mother. I felt very hopeless and as much as I'd reassure him of every person who loved him, we'd have the same thing happening week after week.

I called our doctor and took him in. I didn't know what else to do. I knew there was a problem and I had nobody else to turn to. The preschool agreed there was a problem, but they hadn't seen it before either. They loved him to pieces and he was so bright that we couldn't understand what the issue was.

God bless our doctor who listened to a heartbroken mother and immediately sent us to a pediatrician in town who specializes in diagnosing Autism and Autism Spectrum Disorders. We thought Nathan might have Asperger's Syndrome, but he does not. He was diagnosed with Semantic Pragmatic Language Disorder (SPD) which is a British diagnosis that is not accepted in the USA by all psychologists. The American Psychiatric Assoc. does not recognize it because it was discovered by the British. So it puts Nathan on the Autism Spectrum--but because the APA doesn't recognize it, the school district wouldn't accept it and he did not qualify as Autistic. Again--no services.

We took her recommendation for counseling and saw a Psychologist for almost a year. We'd take him with us after preschool and go see Dr. Karen. She mostly worked with Sean & I on ideas to help Nathan out. She had some great insight into his need for structure and warnings. We started practicing making him leave a puzzle before he was finished putting it together so he could practice interruption at home. We did lots of role-playing. We would pretend what we would say if our teacher says this--we say this.

In the course of all of this, we had our third child and decided to move to a larger home before Nathan went to Kindergarten. We knew that once he started at a school, we would not be able to move him to another school until 2nd or 3rd grade. We needed space sooner than that so we moved within our district to a larger home and different schools. Dr. Karen helped us transition him in the move as well. We waited 60 days to close on our new house and every day during that time, we drove by the new house at least once a day. Due to some findings on the inspection, we had to have some work done before we moved into the house. Every time we had workers in, Nathan & I were there looking at our new room and talking about our new house. By the time we were two weeks out from closing, he started asking why the bank was being mean and not giving us a key to our house. The move was a fairly smooth transition.

We let him go through Kindergarten without making much ruckus. I went up the end of the school year and met with the principal. I showed her all our documentation and she explained he didn't qualify for services. I knew that but we talked about how I felt the need to request a teacher for him--but I didn't know who to request! I didn't know any of the teachers names, let alone how they ran a classroom. We talked about what characteristics Nathan needed in a teacher and she made lots of notes. God bless her, too! She came through for us giving us a tenured teacher who has taught Kindergarten for many years. Our Mrs. P. wasn't flustered by Nathan and his outbursts and crying fits. She and the para Mrs. S. took Nathan under their wings and over time found a system that helped calm him down. In fact, to this day, if Nathan is extra upset--Mrs. S. will come to his room and take him on a walk around the building. They just walk around and talk about nothing in particular until he feels calm enough to go back to his room.

This year saw him get another structured and tenured teacher. Mrs. L. has been teaching for 14 years and has had great success with other truly Autistic children. We went in before school started and met with her. We talked about Nathan, his issues and what we've found that does and does not work. She had some great ideas as well and off we went. He likes Mrs. L. and school, but this year the work is a little more involved. While it's not too much for him because he's a very gifted young man--the pressure of the higher expectations started taking their toll on Nathan. His gifted teacher and classroom teacher got together with us and helped us start the process of trying to get him classified as Autistic.

It's amazing how a different school and a different school psychologist can make all the difference for a little boy! Our school psychologist at the new school sat down at the first meeting and said, "I've looked through Nathan's very fat folder. It seems you've had concerns about him since he was about 18 months old. I saw the SPD diagnosis and while that doesn't qualify in America as Autism, I just need to do some additional testing and write a letter explaining that SPD would be called an Autism Spectrum Disorder in the US. If his test results are consistent with an Autism Spectrum Disorder, we should have no problem classifying him as Autistic."

That's it....tests and a letter? Why couldn't the psychologist at the last school do that for us?!?! So we had him classified at school as Autistic. He received Speech and Special Ed. for the Autism and Gifted Services because he's gifted. Our district is looking into a 2E classification, but it's not yet in place.

We learned about the 2E classification last year at a parent seminar given by our local gifted association. We used that information as part of our basis for getting Nathan classified as Autistic by the district. Our journey continues on...but we're starting to find the resources we need to help us out. I haven't had success finding other parents of 2E kids on the web. Sean & I spent so very long floundering and trying to do the best we could for our kids. I'm creating this blog believing that if I can help one parent and one child find the help they need, I will be successful. I've prayed long and hard about putting our story on the web...but I know the Lord is directing me to do this. Somebody out there needs me and to hear my story...just as much as I need to hear their story, too.

I hope and pray we can create an online community for each other. A sounding board and a place for idea exchange. Let's talk about what is working and what isn't. Let's help each other wade through the 2E experience together. Let's lift each other up. Let's do it for each other...and more importantly, let's do it for our kids.

I can't wait to hear your story. Please email me at coolestmommy (at) gmail (dot) com or post a comment or subscribe and keep up to date with what is going on here.

6 comments:

Cheryl is on one of my writing lists and I hopped over her when she posted. I know how you feel. Your story felt like a window into my soul.

My son is 6, in his second year of school. We move every two years with the army and he has just started at a new school.

He has Pervasive Development Disorder not otherwise stated. HIgh anxiety and senory problems and ADHD and probably Oppositional defiance disorder. Basically on the Austism Spectrum. Our home is like a battlefield, he likes his school but hates the work, he can't read and hates writing with a PASSION. He's left handed too which doesn't help. He's such a smart little boy but so angry sometimes, we don't have any crying or clinging issues but we have ALOT OF AGGRESSION.

After seeing specialists it is better but we still struggle every single day. I don't work anymore outside of the home and we live right across from the school so I can go in and help when its bad.

But it's really HARD and some days I just want to cry non stop. It's like I have a different child to boy I had at 2. BUt I see sparks of such a beautiful smart little boy that it keeps me positive.

I hope that people see your blog and start to share because it truly is helpful!!!!

I am so living where you're at!! I understand a lot of what you go through. We don't have as much aggression at our house, but we have lots of tears... everyday... both Nathan and I cry. My heart breaks for you on the days when all you can do is cry out your frustration.

I'll be praying for you. I'm also going to try to put a little of what I've learned up in a post that might help strategize for you.

If you ever need to talk more, my email is on the sidebar of the blog. I'm not always the fastest to respond, but I will.

I guess my 'gold nugget' to give you today is to remember in the midst of the worst days that our joys in parenting are that much more significant because of the lows we've been through.

Praying for you and your family. I also thank you and your husband for his service to our country. It means a lot to me to know we have men and women who will serve our country. God bless you all!!

Thank you Robyn.You know how tough it is. Some days I used to wake up sick in the stomach on a school day not knowing what would be the next hurdle to deal with. It's better at this new school but he is still having problems and doctors are pushing to medicate. I am holding out but I can't help thinking would it be better for him if I did?

Some days he is fantastic to be around but other days it's a nightmare. That said he is such a smart little boy and he makes me giggle at some of the things he comes out with. So we are just hanging in and hoping all these specialists are worth the money lol.

Thank you for your prayers and mine go out to you as well. Us mums of amazing children have to stick together!!

Keep watching over here. We're going to a Bio-Med doctor this week. I'm waiting until after our appointment to put information out on this site...but it might have some great info for you. I want to experience the process before telling everyone, but that's a sneak peek for Fri. or Sat.

I'll post my findings because we're learning that these 2E kids (and autistic kids) are over-sensitive to medications and to other things that 'normal' people tolerate. We tend to medicate them when they actually have different needs than us...it's so hard to figure out what is needed and what isn't!

I'm so thankful that your son has such a caring mom that is going the extra mile for him!!!!

Thank you for sharing yours, and Nathan's story! What a strange journey it is to get the diagnoses you need, and want! I guess we don't qualify as "2E", because we homeschool, but we will claim it anyway.

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Our 2E (Twice Exceptional) Journey

When our family discovered ourselves on a new path with a 2E child, we found very little support, information or ways to get help. I've searched for other moms online who might help me navigate these uncharted waters. Finding none, I felt the nudge of the Lord prompting me to start a blog.Here's our story of ups and downs, laughter and tears, utter desperation and despair that has been transformed into hope, healing and help.